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ANAD Family – Fundraiser Announcement letter (Template 1)

Dear [insert name],

Do you believe in the possibility of Miracles? [I’m/We’re] writing to you today because [I/We] certainly do! [I/We] firmly believe in the transformative power of miracles – especially with the right support. The INADcure Foundation is actively working on a Miracle of its own, and [I/We] invite you to join [me/us] in making it a reality!

Atypical Neuroaxonal Dystrophy (ANAD), a rare and devastating pediatric neurodegenerative disease, struck [my/our] family when [my/our] [son/daughter] received their diagnosis in [month, year] – after countless appointments with numerous doctors. As [I/we] delved into understanding ANAD (often compared to a diagnosis of Alzheimer’s plus Parkinson’s, but for young children) and exploring available treatments, or the lack thereof, the harsh reality of the situation weighed heavily on [me/us].

PLA2G6-Associated Neurodegeneration (PLAN) affects an estimated 5,200 cases globally, primarily affecting young children. ANAD, a form of PLAN, is an ultra-rare genetic disease. Children with ANAD develop typically during early childhood with symptoms emerging after 2-3 years. Currently, there is no cure or treatment for children with ANAD, which is rarer than INAD (another form of PLAN) and has an undetermined lifespan. However, it is presumed to exceed that of INAD, which ranges from 5 to 10 years, due to its later symptom onset and more gradual disease progression. Yet, amidst [my/our] darkest days, the INADcure Foundation and the impactful work that they support became a beacon of hope for [my/our] family.

The only hope for [child name] lies in a clinical gene therapy trial.
[I’m/We’re] eagerly fundraising for INADcure’s gene therapy research program, which aims to launch the first gene therapy clinical trial for PLAN in 2025. Creating a drug or gene therapy trial for ultra-rare diseases like INAD lacks profitability for major pharmaceutical companies. We simply can’t wait for someone else to save the day. So far, the INAD/PLAN community has raised $1M of the $7M needed for this miraculous undertaking!

[I am/We are] determined to raise [x amount] toward the remaining $6M that is needed; however, [I/We] can’t achieve this goal alone – [I/We] need your support. This funding is crucial to sustain INADcure’s preclinical studies and future clinical gene therapy trial. Regardless of the amount, every donation brings us one step closer to our miracle – initiating a trial to treat children like [child’s name].

The INADcure Foundation, a 501(3)c tax-exempt organization, ensures your donation is tax-deductible within the confines of U.S. law.

Your support holds the promise of hope for [child’s name] and other children enduring the challenges of INAD. Join us today in creating this miracle by backing the efforts of the INADcure Foundation. Make a difference by donating online at [insert your fundraising page url] or by sending a check. Please write [fundraiser campaign name] on the “For” line of your check and mail to:

INADcure Foundation
P.O. Box 11232
Fairfield, NJ 07004

[My/Our] family will forever be grateful for your kindness in making our Miracle a reality. Thank you from the bottom of [my/our] hearts.

[Insert Name][Insert family image]